Advance Directives Part 3 - Now that you have filled it out, what should you do next?

Now that you have filled it out, what should you do next?

1. Well, the first thing you have to do is sit down with your first choice and your alternate decision makers and discuss what you would want if you were injured, disabled or dying. Remember that this form goes into affect when you are too mentally disabled, unconscious or sedated to speak for yourself.

2. Then, you have to give all of your decision makers a copy of your advance directive. You also need to give copies to all of your doctors and your local hospital. You should keep a copy at home either by your bedside, taped to the inside of your medicine cabinet or on your refrigerator. You can also keep one in your car or in your purse. People won’t know what you want if they can’t find your instructions. Doctors get frustrated when the family says, “The patient has an advance directive, but we don’t know where it is.”

3. The next time you go to your doctor, bring him a copy and discuss what you have written with him. Ask him if he would be willing to respect your choices. This is where you can really get into trouble. Some doctors won’t follow what people have written in their advance directives, so you better know right now if he is one of those doctors. Also, some doctors are too afraid to talk about death. If you don’t think your doctor would not respect your wishes or if they are too uncomfortable talking about dying, then find yourself another doctor. I am serious about this. Doctors go against people’s instructions and prolong the suffering and dying of patients in every hospital. If you find yourself in this situation, with the doctor refusing to follow the advance directive, then the bioethics committee at your hospital should be able to help you. If you are the loved one and you are unwilling to follow what is written in the advance directive, then you shouldn’t be the decision maker. Have the doctors use one of the alternates.

How to get an advance directive and other resources.

1. The easiest way to get a free advance directive is to go to the front desk of any hospital. Just tell them you need one or more for your family and they should give them to you free.

2. You can go online to caringinfo.org for a free, state specific form. These are also free.

3. If you need one in a particular language, then do a google search with your state and language and see what comes up. Only a few languages are available, I am sorry to say.

4. Your doctor’s office should have one for you, but unfortunately, many doctors don’t keep them in their office.

5. You can also order one from Five Wishes. This is a very good document for explaining what you would want in certain situations. The document costs $5 each and can be ordered in bulk (25 copies or more are $1 each) at 888-5-WISHES or www.agingwithdignity.org. These forms are valid in 40 states including: Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, The District of Columbia, Florida, Georgia, Hawaii, Idaho, Illinois, Iowa, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Montana, Nebraska,
New Jersey, New Mexico, New York, North Carolina, North Dakota, Oklahoma Pennsylvania, Rhode Island, South Carolina, South Dakota, Tennessee, Vermont, Virginia, Washington, West Virginia, Wisconsin and Wyoming.

Quick Version for How To Fill Out Your Form:

Whom should you pick?
1. Pick someone who will understand what the doctor is saying.
2. Pick someone who knows you well and has listened to you tell them what you want.
3. Pick someone who won’t fall apart in a crisis.
4. Pick someone who will do what you have asked, even if it difficult to do.
5. Write down who you don’t want to be your decision maker.
6. You can pick two or three people to work together as your decision makers.
7. Your spouse may not be your best choice and you may want to choose someone else.

What would you want?
1. This form goes into effect when your brain isn’t working anymore, not just when you are dying.
2. Don’t be too specific about the particular treatments you want or don’t want because you don’t know what the medical situation will be when you need this form.
3. Write out a “Meaningful Recovery Statement” describing what kind of life you would want, if you were disabled and couldn’t think anymore.
4. Tell the doctors what they should do if you were going to live in a terrible condition as well as if you were dying.
5. Write down anything else you want them to know about where or how you want to die, organ donation preferences or autopsy instructions.

Have a kind and respectful day.

Advance Directives Part 2 - What would you want if you were unable to speak for yourself?

Next let’s look at how to tell the doctor what you would want, if you were unable to speak for yourself.

What would you want?

1. The first thing is to remember that this form goes into affect when you are too mentally disabled, unconscious or sedated to speak for yourself. This form will be used when you are injured, sick and/or when you are dying. Too many people, including doctors, think of this form as only a dying form. For some people, this form will be used for years when they have become mentally ill or disabled.

2. The next thing to decide is what you would want in certain medical situations. Should you be specific or vague about the specific medical treatments you would want? I would encourage you to be vague. You won’t know the exact medical situation you might find yourself in and you may have guessed wrong when you wrote down don’t do this or don’t do that. Here is an example: A patient might write on his or her advance directive that they never want to be put on a ventilator. How will this statement be interpreted by your doctors? The doctor will not put you on the ventilator because if he does, then it is considered assault and battery to give someone medical treatments against his will. This recently happened to an elderly gentleman. The gentleman wrote that he didn’t want to be hooked up to a ventilator, but what he meant was, he didn’t want to live on a ventilator. This became a problem when he needed to be hooked up to a ventilator for 4 days in order to recover from an infection. He didn’t need it forever, just for a few short days. But because he was too specific, the doctor couldn’t save him. So be careful when you request certain medical choices. Make sure that what you have written would work in all situations.

3. So, now that I just scared you, you are probably worried about what to write in this section. I have a solution. It is called a “Meaningful Recovery Statement.” You need to explain to the doctor, “What kind of life would you want to live if your mind no longer worked well or if it didn’t work at all?” Now for some people, any condition is okay as it is God’s will to determine how we live and when we die. But for others, you can’t think of anything worse than living in a nursing home, wearing diapers, having other people feed you and not being able to recognize your loved ones. But how will your doctors know what you want if you don’t tell them? Doctors know how to practice medicine. But what they don’t know is what would make for a “meaningful recovery” for you. So you have to tell them.

Here is my “Meaningful Recovery Statement”:
“I value a full life more than a long life. If I have lost the ability to interact with others and have no reasonable chance of regaining this ability or if my suffering is intense and irreversible, even though I have no terminal illness, I do not want to have my life prolonged. I would not then ask to be subjected to surgery or to resuscitation procedures, to intensive care services, or to other life-prolonging measures, including the administration of antibiotics, blood products or artificial nutrition and hydration. I also believe that the financial and emotional burden on my family should be considered in making these types of decisions.”

Because I have written this in my advance directive, the doctors will know what is important to me. Of course this doesn’t have to be your statement. Write one that is meaningful to you and attach it to or write it on your advance directive.

One more thing, please address the issue of terminal versus non-terminal situations. If you are terminal, then it is important your doctors know where and how you would want to die. If you are only severely disabled, but not going to die soon, then you need to let them know what kind of life would be tolerable for you. The best way to be protected is to write it down.

We have just gone over the main sections. Of course you can write down anything else you want the doctor to know about you. You might want to tell them where or how you would want to die, if you would like to donate your organs or if you are for or against an autopsy. This is your form, so write down whatever works for you.

Have a kind and respectful day.

Advance Directives Part 1 – Choosing your decision maker

Most doctors just hand the patient this form and say fill it out. But they don’t help you fill it out or explain what the decisions mean. I am going to help you think through the process of filling out your Advance Directive.

There are two main decisions you need to make when you are filling out your Advance Directive. Who you want to make your decisions for you and what you would want. After I help you with these two questions, I will then tell you what to do with your advance directive after you have filled it out. At the end, I have included instructions on how to find a form that would work in your state.

Let’s first talk about who you would want to make decisions for you. In your state, your form might ask you to list your agent, proxy or surrogate decision maker. (These words all mean the same thing, but each state its own legal term.)

Who should you pick?

1. You should pick someone who is medically literate. What does this mean? The person should be able to understand what the doctor is saying, be able to figure out the medical words and be able to understand the medical choices being offered. If the person you thought you were going to pick would be confused by what the doctor would say, then pick someone else.

2. You should pick someone that knows you very well, would know what you would want in a medical crisis and would tell the doctor what you have told them in the past. The person you have chosen will be asked to listen to the medical information and then use your values to make the medical decisions. The person is not supposed to use his or her own values, but to speak as if they were you. If the person you thought you would pick wouldn’t respect your choices or has very different beliefs from yours, then pick someone else. You want someone who will speak as if he or she is speaking with your voice, not his or her own agenda.

3. You should pick someone that won’t fall apart in a crisis. It doesn’t do you any good if the person is hysterical, can’t function or can’t stand to visit you in the hospital. You need to pick someone brave enough and who will be by your side no matter how difficult things get. If the person you thought you would pick doesn’t handle his or her own life very well, then don’t have him or her be in charge of yours.

4. You should pick someone that will do right by you even if it is the most difficult thing they ever had to do. Sometimes doing the right thing is allowing the person you love to have a peaceful death. And your decision maker needs to be able to live with the difficult decisions he or she has to make. In reality, he or she is making the decisions based on what you would want, not what he or she would want. But that doesn’t make it any easier. You have to be able to talk to this person ahead of time about what you would want in different kinds of situations. So, if the person you thought you would pick is too afraid to talk about death and dying, then he or she isn’t the right person for this job. And if he or she would refuse to follow through with what you have requested, then pick someone else.

5. You can write down whom you don’t want to be your decision maker. Depending on what state you live in, the rules vary regarding who is in charge of you when you are unconscious or incapacitated. You need to protect yourself.

6. Doctors won’t tell you this but you can pick two or three people to share in your medical decision making. But be careful that you pick people who can work together, will support each other and who you know won’t make things worse for the healthcare team. I had one lady tell me that she picked her two sons to make her decisions and that these two men had never agreed on anything. She is setting herself up for a nightmare as good decisions won’t get made and the doctor will hate having to deal with her sons. You don’t want your doctor to hate your decision maker. Please pick carefully.

7. Some people don’t pick their spouse because they know that it would be too much for their loved one to go through and that their spouse couldn’t make these most difficult decisions. If you do pick your spouse, then you need to be extremely careful about picking the alternate decision makers. The alternates will make your decisions if you and your spouse are injured in the same accident. The alternate should be just as qualified as your first choice.

I am available to speak at your organization or hospital.

Have a kind and respectful day.

Addendum: Comment from Thaddeus Pope. HR 2705 bill before the House of Representative is unnecessary and may be dangerous when it comes to Advance Healthcare Directives.

**Addendum added on June 29, 2009. Thank you Thaddeus Pope, from medicalfutility.blogspot.com. He reminded me that the part of the advance directive that states “who” should be the decision maker may not be a problem for the doctor if it is written by a lawyer. The “what you want” section is the part we should be worried about. Thanks, Thaddeus.

The HR 2705 bill before the House of Representative would give a tax break to someone using a lawyer to complete their advance directive. While at first glance, I love it that the government is considering ways to make sure people have advance directives but there is a hidden danger. The danger is that doctors hate it when people have advance directives written by lawyers. The documents tend to be long and difficult to understand. When you are in the emergency room, you want to have a standard form that the doctors can read quickly and put to use. Not only will the lawyer’s advance directive annoy and confuse the doctor, it may not be read until much later after your life and death decisions were made without your input. That is not what you want. The whole point to the advance directive process is to make sure your voice is heard when it needs to be. What doctors would prefer is for you to use the standard forms found in your state. (see my resource page for one for your state)

Also, you should never have to pay anything for an advance directive. You can get a free one online or get one at the admitting desk of your hospital. Then you can have it signed by witnesses and you don’t need a notary. Just make sure the people witnessing follow the instructions on the form. Usually the witness can not be someone you are assigning to make your decisions for you or somebody in your will. Make sure you read your form carefully.

Please tell your representative to not vote for this bill. Nothing against lawyers. I believe that are definitely times that we should use lawyers. But this is not one of them.

Have a kind and respectful day.

Blog Updates: Newsletter, Interviews, Resource Pages, Listen Feature

I just completed this month’s newsletter.  The feature article is “Communicating with the dying.”  To get a copy, sign up on the lower side of the blog and I will send it out to you.   If you want to get blog updates, notices about new blogs being posted, sign up on the upper side of the blog.  They are separate services.  You are welcome to both.

I feel very fortunate to be able to include a thank you I just received from Elizabeth P in New Jersey.  “Viki helped me in my crisis. There was no wait, no down time, and she knew her stuff!”

She called for help a month ago and just wrote back to tell me that things worked out well.  I was so glad I was able to help.  She was in a medical crisis with her mom and the doctor was not listening and was going against her mother’s wishes.  I told her what steps she needed to take and gave her insight into how to communicate best with the physician. I wish Elizabeth and her mom the best.

There are more Blog Talk Radio interviews scheduled.  They are listed on the side panel.  To hear the show, you can listen live through http://blogtalkradio.com/KindEthics, or you can listen on the phone at 347-945-5152.

You can also use 347-945-5152 to call in to ask questions live.  If you want to listen later, then you can listen through the computer, just click on the link on my site, or download it through itunes.

If you know someone who is doing amazing work that I should be interviewing, please have them contact me.

I was happy to hear that people in Indiana and Maryland used my resource page to get their state-appropriate advance directive.  I just hope they will fill them out.  (smiling)  If anyone needs help with this, email me viki@kindethics.com

I also added a California POLST section to the resource page.  POLST stands for Physician Orders for Life Sustaining Treatment.

Lastly, my great blog strategist and social networking expert, Michelle Price, AThirdMind.com, just installed the listen to the blog feature.  Now you can press listen and while you are doing your housework of playing with your cat, you can listen to the updates.  You can also go through and download them.  I wanted to make sure that this website is accessible to all those with types of needs.

Have a kind and respectful day.

Today is National Healthcare Decision Day

If you read Monday’s blog you will know that medicine can be corrupt and the best defense you can have is to put your wishes in writing. So, what should you be doing today?

1. Talk to your loved ones about what you would want if you were going to live in a terrible condition. And talk to your loved ones about what you want if you were dying. Not just the medical choices but where and how you would want to die and what else might make it a good death for you.

2. Tell your doctors about all of these wishes as well.

3. Fill out your advance directive for healthcare decisions. Go to my resource page to download an advance directive. Print out copies for everyone you care about.

4. Give copies of your completed form to your loved ones and all of your doctors and your local hospital. Keep a note in your wallet stating the phone numbers of your decision makers and where your advance directive is kept. It should be kept on your refrigerator, in your medicine cabinet or at your bedside.

5. Be comforted in knowing that you have taken care of things so it won’t be a burden on your family. It is a gift to them to make sure they aren’t burdened by having to make these difficult decisions for you.

6. If you need help, please contact me at viki@kindethics.com.

Have a kind and respectful day.

Got a question?  Ask Viki.  <!–coldform–>

What nobody is telling you about your Advance Directive

For the patient and family:

The doctor just handed you an advance directive and told you to fill it out. What do you do now? Do you want a feeding tube? Do you want to be put on a ventilator? How do you answer these questions? Do you even know what these questions mean? The doctor is asking you the wrong questions. What he should really be asking is, “How do you want to live after a serious illness or injury? What kind of condition/suffering would you be willing to endure?”

The advance directive form in not just a death form, it goes into effect when you can no longer think clearly enough to make your own decisions. Now, maybe you will only be incapacitated for a short period of time and someone will need to make your medical decisions for a few weeks or maybe this will be forever. An advance directive is one way to stay in charge of your life even when you can’t speak for yourself.

So the right question is, “What kind of life would you want to live if you your mind no longer worked well or if it didn’t work at all?” Now for some people, any condition is okay as it is God’s will to determine how we live and when we die. But for others, you can’t think of anything worse than living in a nursing home, wearing diapers, having other people feed you and not being able to recognize your loved ones. But how will your doctors know what you want if you don’t tell them? Doctors know how to practice medicine. But what they don’t know is what would make for a “meaningful recovery” for you. So you have to tell them.

Here is my “Meaningful Recovery Statement”:
“I value a full life more than a long life. If I have lost the ability to interact with others and have no reasonable chance of regaining this ability; or if my suffering is intense and irreversible, even though I have no terminal illness, I do not want to have my life prolonged. I would not then ask to be subjected to surgery or to resuscitation procedures, to intensive care services, or to other life-prolonging measures, including the administration of antibiotics, blood products or artificial nutrition and hydration. I also believe that the financial and emotional burden on my family should be considered in making these types of decisions.”

Because I have written this in my advance directive the doctors will know what is important to me. Of course this doesn’t have to be your statement. Write one that is meaningful to you and attach it to or write it on your advance directive.

One more thing, please address the issue of terminal vs. non-terminal situations. If you are terminal, then it is important your doctors know where and how you would want to die. If you are only severely disabled but not going to die soon, then you need to let them know what kind of life would be tolerable for you. The best way to be protected is to write it down.

If you would like my special report on “An Insider’s Guide to Filling out the Advance Directive” and other special reports in the future, sign up for my newsletter and once a month I will send you inside information.

The important question we forget to ask our patients.

For Healthcare Providers:

When you hand your patient an advance directive you may be making a critical mistake. We usually ask the patient, “Would you want a feeding tube? Would you want to be put on a ventilator?” The patient doesn’t even know what these questions mean. Most of our patients are medically illiterate. And if we get the answers to these specific treatment questions, it may get us into trouble when the medical condition they are brought in for doesn’t exactly match the situation that was discussed. For most people, it is not the specifics of the medical treatment but the big picture of their life that will matter. So what you really should be asking is, “What kind of life would they want after they are discharged from the hospital.” Ask them, “What kind of life would you want if you your mind no longer worked well or if it didn’t work at all? What kind of condition or suffering would you be willing to endure?”

Why is this type of question important? You’re the doctor; you know how to practice medicine. But what you don’t know is what would make for a “meaningful recovery” for this particular patient. Here’s what I encourage people to add to their advance directive. Their own “Meaningful Recovery Statement.”

Here is my “Meaningful Recovery Statement”:
“I value a full life more than a long life. If I have lost the ability to interact with others and have no reasonable chance of regaining this ability; or if my suffering is intense and irreversible, even though I have no terminal illness, I do not want to have my life prolonged. I would not then ask to be subjected to surgery or to resuscitation procedures, to intensive care services, or to other life-prolonging measures, including the administration of antibiotics, blood products or artificial nutrition and hydration. I also believe that the financial and emotional burden on my family should be considered in making these types of decisions.”

Because I have written this in my advance directive, my doctors will know what is important to me. Have your patients write one that is meaningful to them and attach it to or write it on their advance directive.

One more thing, please address the issue of terminal vs. non-terminal situations with your patients. It is not so much the dying that is the problem but the long term lingering, in a terrible condition that many people find reprehensible.

If you would like my special report on “An Insider’s Guide to Filling out the Advance Directive” and other special reports in the future, sign up for my newsletter and once a month I will send you inside information.

Implementing California’s new “POLST LAW”

1. POLST stands for Physician’s Orders for Life Sustaining Treatment. This form should be used to document the end-of-life conversation you have with the patient or their representative. This form should be used with those who with a terminal illness or approximately 1 year of life remaining.
2. If you are unsure if someone is within one year of death, ask yourself, “Would I be surprised if this patient wasn’t alive a year from now?” If the answer is no, I wouldn’t be surprised, then start having end-of-life conversations and use the POLST form.
3. POLST does not replace the advance directive. Instead, it supplements it by taking the requests of the patient, with physician approval, and puts the requests in action. An Advance Directive is still needed to document who should be the surrogate decision maker, other medical treatment requests or refusals and patient wishes regarding organ donation and/or autopsy.
3. It can be used in the ambulance, hospital, nursing home, board and care and patient’s home. Because it works across healthcare settings, there is clear communication regarding the patient’s wishes and continuity of care.
4. It replaces the Pre-hospital DNR in outpatient settings. It addresses more than a DNR. It also addresses: comfort care orders, level of treatment desired, whether to transfer patient to the hospital, antibiotics and artificial nutrition and hydration.
6. It must be signed by the physician and the patient or their representative. If the representative is out of town, you will need to fax the form to them and have them sign it.
7. Most importantly, by law, if you are presented with a completed POLST form, you MUST FOLLOW IT.
8. The only exception is when the request on the form is requesting medical care that is outside the standard of practice and would be medically inappropriate or non-beneficial. If you are going to reject what is written on the form as a request for bad medicine, you may want to protect yourself as you are going against the POLST law. You should discuss this with the bioethics committee or the legal department of the hospital.
9. You don’t have to use this form if you don’t think filling it out would be appropriate for your patient. But again, you do have to follow it if the patient presents it to you.
10. A patient or their representative can change their mind and void the POLST form. You should draw a line through the form and write VOID on it. If the patient has lost capacity, the surrogate decision maker can void this form. Do not take this decision lightly. The patient voiced strong opinions about their choices, their doctor agreed with their choices and the wishes were documented into physician orders. Be cautious when evaluating whether the surrogate is expressing the wishes of the patient or their own wishes.
10. When you are going to use the form, it must be printed on bright pink paper. The bright pink form is then given to the patient to take home or back to the nursing home with them. You should keep a white copy in your chart. You should also make sure the document is forwarded to the patients other healthcare providers and a copy should go in the hospital chart. You may also want to have the patient put a note in their wallet saying that they have a POLST form and where it can be found.
11. The patient should keep their pink form either on their refrigerator, in their medicine cabinet or at their bedside. The best place is on the refrigerator so the EMT’s can find it.
12. If a patient has a POLST form and an Advance Directive that requests different treatments, the most current form should be followed.
13. This form is to be used, not only to refuse treatments, but to request treatments as well. When talking to the patient about their wishes, instead of saying, “Do you want us to do everything?” please ask, “Would you want us to do what is medically effective?” This will help the patient realize that there is a difference between everything and valid medical options. You should also ask about where they would want to die and how they would want to die. You can ask, “Would you want us to allow you to have a natural death?” AND or Allow Natural Death is the new language to use when talking about DNR’s.
14. For more information on POLST go to FinalChoices.org. You can also download the POLST form at http://finalchoices.org/docs/CA%20POLST%20Form%202009.pdf Final Choices also has a brochure you can download to give to your patients.
15. Lastly, when you are ordering comfort care measures in the home or nursing facility, realize that there may become a time when the comfort of the patient can not be handled in the outpatient setting. If you do need to transfer the patient back to hospital, only treat the uncontrolled symptoms, do not admit the patient into the ICU or increase their level care in order to “cure” them. The goals of care haven’t changed, just the location.

Got a question? Ask Viki.